type 1 diabetes

I often present to schools about how my work is mostly a byproduct of the intersection of my students’ lives and my own teen years. One in Ten is no exception, except that the novel also has significant Science Fiction and Dystopian elements, which are a departure for me. The reason, my influences at the time I was writing.

The exact date for when I began writing One in Ten is unclear, but the seeds were sown years ago with the series Black Mirror and my increasing reliance on technology to assist with my type 1 diabetes.

In fact, Black Mirror season 1, episode 3, “The Entire History of You” significantly launched my mind into overdrive and inspired the technological component in One in Ten. Here’s the trailer:

It’s not the ability to flip back in time that I was intrigued by, but rather the ability to turn the body into a cyborg with technology that allows visual and audio recording, false memories, and for my purposes, the potential for mind control. This aspect is literally embedded into One in Ten in the same way as the tech in this Black Mirror episode, but to very different ends. However, you will feel as unsettled by the novel, as you will at the end of this episode.

There has always been a theme within Sci-Fi that given too much power, technology will turn on its creators. One in Ten explores the idea in different parameters: what if technology could cure us of addiction? If so, could we live with the side effects?

Most of you know that my youngest daughter and I live with Type 1 diabetes, and that we use various tech (patch insulin pumps and continuous glucose monitors) for our care. It’s no leap to conclude that my experience of walking around as a cyborg and letting technology run aspects of my endocrine system informed how I viewed taking a similar concept and applying it to heroin addiction and recovery.

The issue with all medical-related technology is that it is not a cure, only treatment. However, if the tech is integrated in such a way that the treatment leaves the patient “as good as cured” then what’s the problem? Well, what if that tech has capabilities not disclosed, even in the fine print? This turn of thought is where the Dystopian element comes in. It would not surprise me in the least if given the power, government would apply technology to a problem as a pseudo-cure. And quite possibly use the subsequent control to egregious ends.

And this intersection of health, technology, and the overreach of its application is where One in Ten becomes less Sci-Fi/Dystopian and more a cautionary, contemporary tale.

So, between now and April 21, watch some Black Mirror to prepare for One in Ten. I will have pre-order links next week, and I’ll let you know why they matter so much. Stay tuned.

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Last year I was fortunate enough to take a family vacation to Ireland. This summer, after an exhausting school year, my wife, daughters, and I took a trip to Playa del Carmen, Mexico, for a fifteen-year wedding anniversary present. We booked the trip with the ever-awesome Lisa LaForest of Plaza Travel Center, and as I did with our trip to Ireland last year, I documented much of the process of taking two people with type 1 diabetes to a foreign country–this one with 90% humidity and endless hours in the sun, sand, and ocean. For those of you here for book-related posts, this isn’t one of them, but I will provide a writing update at the end. For those of you who appreciate my insight into living with type 1, this is a great post if you’re considering some fun in the sun in the tropics.

Packing

Packing for Ireland taught me so much, especially about the necessity of having a separate bag for all medical products. Foreign countries get a bit concerned when you bring in a lot of medical stuff, for obvious reasons, and so along with the medical bag, I strongly suggest a letter from your doctor detailing what you are using and why. Honesty, this information helps for our own TSA, who have seen a lot, but not all know about or even understand something like the Dexcom sensor or OmniPod. And in this day, just one look at the stuff screams, “bomb search,” which I agree with and completely appreciate.

So as you can see from the pictures, I have everything double packed, so that the TSA has an easy time swabbing the products and then returning them to the plastic bag when done. Making their lives easier makes your life easier. I simply hand off the bag and the rest goes through the X-Ray.

*Side note: At Albany International, because I had a juice box over the allotted liquid amount, I was subjected to a pat down. This has never happened before. I don’t know if there is a change in protocol, but I didn’t fight the search, and was happy the juice was in my bag, and not my daughter’s. She did not need to be subjected to that.

In-Flight

Fortunately, on all flights, neither my daughter nor I experienced the pressure-induced insulin bolus like we did on the return flight from Ireland. We knew we were good because we kept our eyes on our Dexcom app, incessantly, for the first hour. I think because our longest flight was from Baltimore to Cancun, the planes never had to spike into the necessary cruising altitude, as Aer Lingus did. However, that’s just my assumption. If you’re concerned, just suspend for a half hour prior to take off (if using a Pod or pump) and check your number frequently.

Customs and bag check in Mexico

Cancun Airport has a very straightforward method for incoming international flights: they screen all bags. Once your bags are screened, you must then press a button beyond the screening point, and if the light turns red, your bags are then searched by hand. It should come as no surprise that our bags were checked. The security, though, was very nice about the entire process. They took one look at all the medical products and did not ask for any explanation. I don’t know if this is because they understood what was in front of them, or simply didn’t want to know, but either way, we thanked them and were on our way.

It’s all about the Skin Tac and armbands

Once out of the airport and into the sultry air of Cancun, I knew that the bottle of Skin Tac we brought, as well as the arm bands we use for our sensors, were absolute necessities. Ireland has no humidity. Well, maybe not none, but not 80-90%, which we experienced the entire time while in Mexico. If you are wearing a CGM or Pod or infusion set, you are going to need to take great pains to keep your products from falling off. We applied copious amounts of Skin Tac prior to leaving, and reapplied as needed throughout the trip. The added compression of the arm bands kept the sensors on beautifully through our swimming, snorkeling, and dolphin swimming adventure. We wore no additional belly bands or other products to keep our Pods on, but they kept extremely well, with only the need for additional Skin Tac.

Arm band tan 😉

Fun in the Sun

We stayed at the Iberostar resort in Playa del Carmen, and I could write an entire post about how much I adore the resort and staff. If you are considering Mexico, just check out the pictures of the resort. Top Notch.

And not only was the resort top notch, but so was the ocean and beach we came for: crystal blue, 86-degree water and powdery soft white sand (as noted in the header picture). Every day was in the high 90s, with non-stop sun. This is the perfect recipe for a beautiful beach day, but for us with type 1, it is also the perfect recipe for wreaking havoc on our blood sugar. Therefore, we spent as much time in the shade as we did the sun, wore rash guard UV blocking shirts in the afternoon, reapplied sunblock every hour, and drank as much water or diet soda as possible.

Hydration and staying cool are key, and not only while at the beach. As soon as we stepped away form the water, the humidity kicked in and it became as necessary to keep drinking. A word of caution: all-inclusive resorts and their beachfront bars are great, but cervazas and mojitos do not hydrate as well as water 😉 Take advantage of water whenever you can, so you aren’t struggling with the hypoglycemic reactions to overheating that can be so common for us.

On water

The ocean in Mexico is beautiful, but the same can’t be said of the h2o. A general rule we followed was that if it’s bottled, or if it’s from the resort, drink it. Other than that, don’t. However, we still brought strong antibiotics. Talk to your endocrinologist about doing the same. Because one bought of gastroenteritis for a non-type 1, could ruin a vacation, but for one of us, it could result in hospitalization. We were fortunate and did not need to use the antibiotics, but I felt much safer knowing that we had them, just in case.

In Water

Aside from swimming at our resort, we took two excursions: snorkeling on the Great Barrier reef in Cozumel and swimming with dolphins in the Ecological Park of Xcaret. Regardless of whether you use CGMs and receivers or your phone, and a Pod or pump, as a type 1, you will, at minimum, have a blood glucose kit. The kit and any other products have to stay dry, period. So how do you do that while snorkeling for three hours and swimming with dolphins for one hour?

We picked up a dry bag prior to leaving. We knew it would be good for keeping the water and sand out of our products while at the beach, and figured it would come in handy when even closer to the water. Additionally, I picked up a Pelican case for my daughter’s kit, phone, and receiver. I already use one and adore it, so with these cases and the dry bag, I knew we would be safe on land. On the boat and directly in the water were different concerns.

PDMs in one case; receivers in another.

The dry bag with cases and phones.

Our only evidence of swimming with the dolphins. The experience was great, but the video and photo package was a ripoff.

Many of the snorkeling outfits, including those we could have gone through via our resort, are fantastic, but they pack as many as twenty customers onto the boat, with as few personal belongings as possible. That wasn’t going to work for my family, as we had to bring all our products and juice and snacks and back up insulin pens, etcetera, because we chose to take the ferry to an island almost an hour away. Therefore, I got on Trip Advisor to see which companies were best for small parties. One name came up,Mystic Snorkeling. Review after review praised the company for the attention to detail with small parties and what a wonderful experience was had. I sent an email to them describing our situation of needing safe, dry storage for all the things we need to stay alive. I received a call hours later, assuring me that all would be taken care of, and it was. The captain tucked my bag of tricks beneath his wheel and personally watched over it. This may have been possible with a crew that took a larger party, but I doubt it. Therefore, if you are planning a day on the water, consider using Trip Advisor or the concierge to find a crew that only deals with small parties. Aside from my family, one other couple joined the outing, and the six of us had an exceptional time peering at rainbow parrot fish, and barracuda, and the vast coral life below, all while knowing if I needed anything aboard, it would be safe and dry.

The water above the amazing snorkeling below.

Sugars on the rise, because it’s best to be safe before jumping into the ocean.

The dolphin excursion posed a similar concern. What do you do with the essentials, after you’ve been asked to tuck away your personal belongings into lockers? The dry bag came in so handy. I simply told the guide that I had medical products that I needed to be near us, and he created a spot on the dock for me, no issues (most dolphin swim experiences do not allow you to bring any phones or cameras near the swim area because they try to get you to buy their photo and video packages at the end, so it is important to be upfront about needing to have your bag with you). Because the products were in the aforementioned cases and bag, I felt at ease while swimming with dolphins. I’m not sure I would have felt the same, had our products been in jut a back pack or something similar.

Food and Glucose levels

I don’t know how you generally approach tight control when it comes to vacation, but for us I go with a shifted goal point. My range is 90-170, normally; for vacation, that bumps up 50 -75 mg/dl (Note the Share image above). Same for my daughter. It’s just safer. And considering all of the factors that I’ve already mentioned, now throw in carb counting with mostly foreign food (like bananas fried in honey) and you are potentially facing a heap of trouble if you keep things too tight. So, if my daughter and I ran in the 200s all day, great. If higher, I might bolus, but only a half correction. Same for meals. I never gave the fully suggested bolus until we were back home. Better to have to correct a couple of times, than to have to sit out from time in the ocean because of a low. Again, not necessarily what your Endo is going to tell you, but the adage of “better being safe than sorry” has always been sound advice.

Anniversary dinner on the beach.

You can’t go wrong with dessert.

In Conclusion

If my daughters had it their way, we would visit a new country every year. I love that idea, not because I can actually afford to do such, but because it tells me that our traveling has lit a spark of wanderlust. And for my youngest, who is type 1, not being afraid to leave the comfort of the bubble-life we often create around having type 1, and wanting to see the world, lets me know that all the packing and prepping were worth it. It’s not always smooth sailing, but if you prepare for the worst and hope for the best, chances are you’re going to be all right. She sees that, and I look forward to wherever we travel next, because each trip brings us closer to the destination that is truly the goal: independence. There are ways type 1 binds us, and we cannot break those trappings, not yet, but we certainly can pack them up and take them wherever we want to go.

Love this wacky family of mine.

Writing Update

If you’re still here and wondering what I’ve got going on, here it is. I’m finishing what I believe is the last draft of a novel before it goes from my agent to be shopped. Fingers crossed. After that, I’m picking up on a novel that I’m halfway through, but needed a break from, because it took a strange and awesome turn. It’s like nothing I’ve ever written, so I need my agent’s feedback. After that, I already have an idea fleshed out for what’s next. Therefore, if I can generate these stories into sales, you’ll have some steady work from me for the next few years.

I hope you are enjoying your summer and are getting as much pleasure reading in as possible. If my work happens to be part of that, please send me a pic to let me know. I’ll share widely. Gracias.

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My editor is fond of saying to me that a good story allows the reader to see both the forest and the trees. This past weekend, my family was fortunate enough to attend a family retreat for those with children with type 1 diabetes, at theDouble H Ranch. Attaining the perspective my editor suggests became the paramount element of the experience.

Close to 30 families, with various amounts of children with or without diabetes were in attendance, along with volunteers and staff. Double H, which exists to provide fun for those with disabilities, was shockingly not all about sitting around and talking about the struggle with it. Rather, the focus was providing an opportunity for children and their families to just hang out and enjoy in a safe and supportive environment. And that environment, that forest, was everything.

I have been around other type 1 camps and am, therefore, used to the sounds of glucose meters and pumps sounding off, and people calling out numbers like some strange lottery. The rest of my family is not. For my wife it was at first disconcerting, because she thought it was either Kaygan or me, but she then quickly realized it was the entire room. That moment when you realize we are “all in this together” is not some cliché, is so affirming, yet at the same time, kind of heartbreaking.

Watching my daughter not shy away from testing her blood or dealing with her pump was the key for me. It was evident that she realized she didn’t have anything to hide, because no one in the room felt awkward by her presence and her disability. Because, sadly, in her regular life, people do. Every. Single. Day. Just as they do in mine. So, lifting that layer of discomfort, if only for a couple of days, was a major reward.

And so was having the opportunity to talk about diabetes, amidst conversations about regular life. The beauty of the weekend was that everything was loose. The children played and had their own silent awareness of the discarded stigma, while parents gathered to chat about the minutiae of the disease. We learned form one another via our shared experiences. And that is powerful. Often at support groups people are hesitant to open up, to admit just how much of a hard time they are having at handling things. That wall comes down when you are able to hang out with others and not have to deliver monologues that summarize your experience, but rather weave yours into conversations that ebb and flow around the myriad aspects of the disease.

Because type 1 is a multi-layered disability. A common question I receive is the following: What affects your disease? I’ve boiled my answer down to this: Living. On the surface it may seem crass, but if you take a moment and consider, it is the only reasonable answer. Every little thing we do, from the amount we sleep or eat or move, affects how we manage this disability. And that underscores it all. We live, in spite of this disability that many do not understand or confuse with type 2. We live, and we strive for the best “normal” life under tough circumstances. We live, and we feel shame and guilt, even though we know it’s not our fault, and that there’s no one to blame.

And after this weekend, I’m glad to know that my daughter has a sense of that “we.” Everyone with this, and with any other disease or disability, is at the same time both incredibly alone, and equally surrounded. Sometimes just knowing that others feel what you feel is enough. Often, seeing is believing.

So thank you Double H, and Pump Wear, and all the staff and volunteers, who allowed us to see the forest for the trees.

––Carrie, Eric, Grace and Kaygan Devine

*For any parents from the weekend who are reading this and want to findThis Side of Normal, just click on the book title for options*

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Here’s the truth: insulin is not a cure for the millions afflicted with type 1 diabetes. It is a potentially lethal medication that we inject daily in order to survive. Type 1 diabetes is not as simple as “eat and take your medicine.” However, many believe that. This is why research for type 1 diabetes is woefully underfunded. Yes, we can live, but in this day and age, I believe the expectations should be higher than those of 1921, when insulin was discovered.

Therefore, that is why we are asking for donations for this year’s Juvenile Diabetes Research Foundation Walk. The JDRF, unlike the American Diabetes Association, donates 100% of the money raised. And it all goes toward research for prevention, care for those afflicted, and experiments for a cure.

I have lived with this disease for 23 years. Back when I was diagnosed, I was told there’d be a cure in 10 years. Fortunately, no one made that same false claim for Kaygan. Unfortunately, it’s because no one knows when the cure will emerge. However, one thing is for certain, without funding, whatever the answer is will take that much longer to uncover. Because even though this isn’t 1921, and we live much, much better, we’re still not cured. There is no cure. But there is a way to change that.

This year’s walk in May 4th at the University at Albany; kickoff at 11:00 AM. If you walked with us last year and want to come out again, great (wear your shirt). If you’re new and want to join the ranks, awesome. If you can’t attend and just want to donate, no worries. Follow the link for one-stop participation. And, regardless of your choice, thank for being awesome.

Every person who delivers his or her gem of a line kills me a little inside. Fortunately, my youngest doesn’t notice. My eldest, however, she now turns to me and shakes her head saying, “Daddy, it’s not a lunch box.”

“I know,” I tell her, but I really don’t.

Because it’s not a lunch box, even though it looks like one. That’s the point. Sure, it would be easier for people if the bag were bright red and had DIABETES stenciled on the front, so it was clear that this child-size bag I’m toting has a medical purpose. But I’m not so concerned about making things easy for other people. I have one person whose life I’m trying to make easier, and if that means slinging her pink, white, and blue camo around my shoulder, then that’s all there is to it.

For my critical audience, please note:

It’s not a lunch box

I’m not trying to be cute

The color pink is not a barometer of my sexual identity (and if you honestly still think this way, grow up)

My daughter can hear you

That last point is the most valid. Because even if this were a regular lunch box, wouldn’t it stand to reason that I’m carrying it around for a purpose, and that the purpose may have something to do with the small female who is with me? And if that’s the case, then making a crack about me helping my daughter is a bit unnecessary.

Sure, I could save myself the trouble of these intrusions by having my daughter carry the bag or by getting a neutral color. But she’s three-and-a-half feet tall, weighs a little over forty pounds, and LOVES the color pink. She’s already carrying around the burden of this disease. Do I want to load her down with more, or tell her she can’t like what she does? No, no I don’t.

And this drives me a bit crazy on a personal level as well. I’ve dealt with the same as a teen and as an adult. People still ask about my “vanity bag” or “shaving kit”. Always with a wink and a smile as if this is the funniest damn thing that has ever occurred–a male, with a bag. It’s mind-boggling to me that anyone feels comfortable enough to say something. I’ve always been instructed to mind my own business, and I guess I’m just looking for the same in return.

Because if this continues, I’ll stop wanting to be polite. I’ll stop responding with my trite answers:

“Why, thank you.”

“Yes, pink shows up my eyes.”

“Of course princesses, what else?”

“It’s beautiful.”

I’ll slip in a jab: “Would you prefer if I keep her alive while wearing another color?”

But I know it will be at that point, when I slip, that my youngest will turn to me and say, “Be nice, Daddy.” Because she’s been listening the entire time, and she knows to mind her own business and to be kind to others. She’s been to Kindergarten, and therefore, knows everything.

I only wish others would remember.

*If you know someone with a young child with diabetes, share this article with them, and then the next time you’re out together, shoulder the bag. You’ll see.*

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I just finished five days as a single parent. Yes, I’m exhausted. But beyond the fatigue, I’m also glad to have had the opportunity to be with my daughters for such an extended period of time.

*First, a disclaimer. I am not technically working right now. I write in the morning and am not on a deadline, so my schedule is much more relaxed. Had I been trying to juggle a full-time “job”, I don’t know how smoothly all of this would have gone down. In no way do I feel as accomplished as the true single parents out there. You have my utmost respect, and I’ll gladly buy you a drink, or let you take a nap.*

My girls realize I’m a work horse. I enjoy doing, being active, for as many hours of the day as possible. We went on bike rides, walks with the dogs, trips to the park, and swimming, so much swimming. They took advantage of the fact that on all of these excursions, I’d carry the bag, the water bottles, be responsible for the leash and both dogs, the towels, the snacks, the ipod and docking station, and on and on. And I enjoyed this position. It let me know how my girls view me. I serve them. I’m a staunch believer in gender equality, which means I get to choose, and so do they. Our unspoken agreement of let’s see how much Dad can do, was perfect, both ways.

And there had to be entertainment. So we took trips to the library–got books and movies and signed up for summer reading, went and saw Monsters University, and then worked on our own story telling–outlining the plot for our first children’s book (it has to do with caterpillars).

Throughout all this, of course, I had to maintain my home, the lawn, and make meals and provide small touches of dining fun–like smoothies and Jell-O cake baking. And, yes, I had to provide care for my youngest’s type 1 diabetes, as well as my own. That was a juggling act unto itself, but one I have a lifetime of practice with, so managed quite well.

Most important, I was able to sit and listen to them. My daughters talk to my wife about “girl” things all of the time. She wasn’t around, so I was the sounding board. Our impromptu meetings were my favorite part of our time together. I gave advice about manners and etiquette, bike riding, boys, fashion, self-esteem, education, religion and creativity. I offer the same when my wife is around, but this time, these moments felt much different. I think because they know I have no filter–my wife is smart and censors me–but they also knew along with the honesty, I would not just spit platitudes, but provide examples, analogies that help them see. I teach for ten months out of the year, but I feel as if I taught more in these five days than in those 180.

Yesterday my wife returned. We were all excited to welcome her back, especially my daughters, who clung to her like magnets and later demanded a girls-only movie night with her. But before they segregated us, my daughters told my wife of all we had done. They pulled out the list that they kept track with and told stories of our days.

I liked the man in those vignettes. He seemed like a good person, the kind I’d like around my daughters.

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Every year I present to various schools that use my first novel, This Side of Normal, as a text within the Biology curriculum. I love these opportunities because I get to speak with teens I don’t work with, and have the opportunity to connect with them about storytelling. This past Friday I attempted this with an auditorium of freshman.

I know how checked out students can be on a Friday afternoon, and this group came in riled up and ready for the weekend. I watched the cliques form along the rows, saw the unimpressed looks, the phones out, the boredom.

This is a fear-inducing moment, that instant when you realize the story about to be told had better be one awesome experience or the next forty minutes are going to be painful for everyone. That “A game”? Yeah, bring it.

And so I did. My presentation is on Prezi, so score one there. I didn’t tell the kids to put their phones away, because that’s like asking them to hold their breath–it’s only going to last so long. Another score. Then I asked them to relax and let me entertain them before the weekend hit. They eased back, and I began.

I tell my story of realizing I have type 1, how I handled that at home and at school. I tell wacky stories and bounce around the room. Literally. And on this day I did so with more gusto than I would normally. And the audience was into it. They laughed at my jokes, answered questions when I asked, and overall had a good time.

Then came the true test–No, not the pitch for my other books, that came at the end. I cannot talk about diabetes without discussing my daughter, Kaygan*. However, this was the first time I did so in front of a room of strangers, of teenagers who wanted to be into the weekend.

I pulled up the slide with the following picture:

The room was silent as I explained. To their credit, this group of kids who had read my book, and may or may not have been interested in what I had to say, treated with reverence, what were, for me, some of the most difficult words I have ever uttered.

That was the moment. Not the one where I knew I had to earn this presentation, but the one where I knew they cared. Because, really, that’s what my presentation is about. Caring enough to share, to pay attention, and to tell powerful stories. They got it, and then I talked about Tap Outand gave them a sneak peek at Dare Me.

The presentation was nerve-wracking and painful and a little sad, but ultimately triumphant. Just like the novel they had all read. There’s something to that. And I have the freshman of Shaker High to thank. Here are a couple of their tweets to me:

Keep it classy, Blue Bison.

*For those of you who have followed Kaygan’s diagnosis and adjustment: she’s now on an insulin pump and doing very well. She’s the same diva, but with one exceptional accessory.